期刊
AMERICAN JOURNAL OF BIOETHICS
卷 15, 期 7, 页码 3-14出版社
ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
DOI: 10.1080/15265161.2015.1039721
关键词
genetics (clinical); decision making; informed consent; public health; law; medical humanities
资金
- National Institutes of Health (NIH) [2P50HG004488]
- Center for Genomics and Society (CGS) [1U01HG006487]
- NCGENES: North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing
Advances in genomics have led to calls for developing population-based preventive genomic sequencing (PGS) programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the sequencing or analysis of specific genomic conditions (the menu approach) or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations.
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据